N.J. 7-year-old girl to lobby in Washington for medical care for children with disabilities

Zach Ornitz/The Star-LedgerLinda Traute, left, Teresa Santos, right, and their adopted child, Madison Traute-Santos, 7, will be going to Washington to lobby for more aid to handicapped kids. Madison has become a spokesperson for disabled children. Traute is an employee of Children's Specialized Hospital, and adopted Madison there after the baby was born premature and weighed just a little over a pound.

Madison Traute-Santos is not a typical Washington lobbyist. Sure, she’s friendly and direct enough, with a persuasive smile, but there’s something about the silver plastic tiara she’s wearing that suggests she might not have the gravitas to ice a backroom deal. Especially on a topic so loaded as health care.

"I’m going to talk to President Obama’s friends and make sure they’re working," says Madison, exchanging the plastic tiara for a pink baseball bat and ball. Her parents duck and tell their 7-year-old to put the sports gear down.

"I want to talk to the president and I want to go to President Obama’s house."

She says this with an upward sweep of her arms that is part exultation and part plea. She wants to go the White House so badly that she already has told her first-grade classmates in Roselle Park that she will meet the president this week, something her parents are trying to tell her won’t happen.

"Her expectations are very high," Linda Traute says. Traute and her domestic partner, Teresa Santos, adopted Madison four years ago, two years after taking her in as a foster child. "We’ve had to tell the school it’s not likely to happen."

Among other things, the president will be returning to the Gulf Coast.

So Madison will have to settle for touring the Capitol and wandering the maze of Congressional offices looking for representatives. These are, loosely, "the friends" of the president (very loosely, because they include Republicans) to whom she will pitch her message: Increase support for children’s hospitals.

It’s part of an annual effort by the National Association of Children’s Hospitals to bring success stories from these facilities to the attention of lawmaking. Madison was one of 34 children from throughout the country chosen to participate.

The big issues, according to an association fact sheet, are Medicaid reimbursements for pediatric services and tuition and grant support for health care workers who want to specialize in pediatrics.

"We have to do what we can to ensure children’s hospitals are supported in the new health care legislation," says Traute. "Without these specialized institutions, someone like Madison might not be here."

Madison was born three months prematurely in January 2003 at Newark Beth Israel Medical Center. She weighed 1 pound, 4 ounces.

"If she had been born a day or two earlier, she probably would not be here now," says Traute. "She was that small and fragile."

She was transferred to Children’s Specialized Hospital in Mountainside, where Traute works as a human resources specialist.

"Sometimes, I just go by where they keep the babies just to see them," says Traute, who has been with the hospital for nine years. "And there she was."

She and her partner had been looking to adopt for years.

"There was something about her — she was small and had a lot of medical issues but she was so alert, always looking around, taking everything in. The nurses called her ‘Miss Nosy,’" Traute says.

Then she found out the hospital and the state Division of Youth and Family Services were looking for a foster home for the premature baby.

"I got so excited and called Teresa and said, ‘I found her! I found her!’ "

Santos, who owns a construction company, saw the baby and agreed. When Madison finally left the hospital in December, almost a year after her birth, she came home with Linda Traute and Teresa Santos.

The little girl stayed on a feeding tube until she was 3. Although she suffers from asthma and a slight hearing loss, most of the medical problems related to her premature birth have been resolved.

Amy Mansue, the chief operating officer of Children’s Specialized Hospital, says Madison’s presence with her parents will have a compelling impact on legislators.

"Let’s face it, I’m a suit — I love what I do, but everyone there knows I am paid to do it," Mansue says. "To hear children and their parents tell their personal stories will have an entirely different impact."